Can having had one AVM predispose you to more? In different areas of the body?

Hi all, was diagnosed with a uterine AVM in 2009 after a massive haemorrhage when pregnant. Had it embolised twice, went on to have my son and then eventually a hysterectomy at 40. I am 48 now, and have been diagnosed with iron deficiency anaemia. Because i dont have a uterus, they sent me off for gastroscope and colonoscopy. Both clear. Today I saw the gastroenterologist again, to discuss capsule endoscopy of the small intestine. He briefly mentioned this concept of a “blood blister`’ and angioecstasis. Googled that tonight, and up pops vascular malformation! Are you kidding me? Another site called angioecstasias AVMs, and now my brain is going down a rabbit hole. No wonder the gastroenterologist was so interested in my uterine history and so intrigued when I told him about my AVM. Is this something others have seen? More than one AVM, in different body parts? Appreciate your insights.

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Hi

Yes I have multiple AVM in different places - one in my right foot, one in my left eye below the optic nerve and more in the whites of my right eye.

I know this is unusual however - it might be worth pushing for genetic testing re HHT (which can cause multiple AVMs - just to be safe). It is also probably a good idea to push for your lungs being checked (I know they are rare to occur in the lungs but serious) and your brain. Again no reason to think you have any there but 100% worth getting checked.

I had my lungs checked earlier in the year (all clear) and I am waiting for a brain mri after Christmas.

Hope that helps!

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:arrow_up: Exactly what @Writerchick says :clap:t3:

Hi Dick
Years ago, I wrote up from AVM story on the platform, using my married name. Since then I have copied the link and shared it many times with other women, but I can’t find it now.

I think I did recently change my name on the platform, but I still can’t find it. Do you have any ideas on how to find it?

Thanks
Amanda

@Amanda_B

Hi. I would say that what has happened in the meanwhile is that we anonymised people’s accounts, so you’re currently @Amanda_B. You can always find all of your own stories on your “activity” page, which is here: https://avmsurvivors.org/my/activity.

Since our forums are openly accessible to the Internet, our recommendation is always to stay towards anonymous. So while it is important for us to be able to share our stories with each other, it is also important to keep that medical history – that very private data – disconnected from our identity.

If you need any further help, do message me.

Very best wishes,

Richard

Amanda,

The other thing that has happened in the last 12 months is that the forum moved from being www.avmsurvivors.org to being forum.avmsurvivors.org

So if you’ve saved a link that starts “https://www…” or even just “https://avmsurvivors…” change it so that it starts with “https://forum.avmsurvivors…”

Richard